New to board, Is diagnosis correct?

iVillage Member
Registered: 05-02-2003
New to board, Is diagnosis correct?
5
Sun, 06-12-2005 - 11:26am

I have 6 1/2 yr. old id twin boys who were diagnosed over 2 yrs. ago w/PDD-NOS. I tried in vain to get services from our Sch. dist. All I got was speech therapy and they will not agree with the PDD diagnosis.

One of my boys got a great teacher this yr. and he is almost age level in speech, socializes, has very few meltdowns and is behaving almost like a typical 6 yr. old. He made friends and enjoyed school. Other than occasional meltdowns and avoiding eye contact at times, he seems to have left his ASD behaviors behind him.

My other son didn't have as great of a teacher and is at the very least not improved and maybe even a little worse than a year ago. He is much less social than his brother, still has a lot of speech delay, melts down often (especially in new environments) and just wouldn't settle into school. He rolled around on the floor, rocked in his chair and didn't participate in music, gym, and most group activities. He even pushed another child into a wall out of frustration, but could only say that the boy was "talking at him." It seemed like he doesn't understand what was going on and can't ask the right questions or commuicate appropriately. The school envirnoment just didn't work for him. All the teacher and principal wanted to do was discipline...time out, behavior contract, trips to the office, sitting out at recess and lunch.

Neither engages in repetitive behaviors. They imaginative play all the time and have made progress in speech. They can write all their letters, know most letter sounds and have started reading simple sentences. Their math skills are even better.

Could all of the inattentive and anti-social behavors (meltdowns, etc.) been related to their speech delay? Or could they have more of a sensory integration disorder and not ASD? I have pushed hard with our Sch. Dist. to accept the PDD and hate to back down, but I'm not so sure any more.

I'm trying to get a handle on both boys' specific needs so I can push for changes in the school environment next year. They are both very bright boys and I feel they are being cheated out of an education because they are not typical kids. I don't want them to develop emotional problems from being punished at school for behaviors they cannot control.

I'm looking into OT. Have an eval scheduled for Tuesday.

Any advice would be greatly appreciated.

iVillage Member
Registered: 02-02-2004
Sun, 06-12-2005 - 7:48pm

hi... your boys sound like my son also 6-1/2yrs.. he too is speech delayed, but no other "issues" no spinning objects/hand flapping, rocking ect, will wear any kind of clothing, eats everything... last year he was tested(2-1/2 days..long days..)for Austim... he didn't meet the criteria, this year he was evaluated for add/adhd... sort of fits, but not really...has a hard time focusing... all the "experts" say he has "splinter" charactoristics(??)one DR. called him "quirky" and another called him mentaly changelled(grrrrrrrrr)... their advice is Ritalin.

I'm not willing to do that yet, he has an appointment with a naturalpath Dr.who is going to do a blood test,checking for 95 comment food/enviromental allergies. I have also been doing some research... Salicylates, can do very strange things, if your sensitive to them. and you should see what splenda does to your body... no more "diet" things in this house....

good luck with your journey.
and its OK to change your mind... the best person to speak for your child is you... and you do whatever it takes. Go with your "gut" feeling

iVillage Member
Registered: 05-02-2003
Sun, 06-12-2005 - 10:34pm

Thanks!

I've gotten advice to try Ritalin too....from the school. It's an easy fix for them, but not for my boys. I have heard too much negative info on Ritalin that it's out of the question.

All they both need is an environment that works for them. If they would allow them to work in a place without so many distractions and not be so insistant that they participate in all they group activities, they would be ok. I just wonder what the big deal is that they can't allow a child to do something else instead of sing in a circle or play some stupid game that doesn't really teach them anything anyway. All they say is that children need social skills.

I am going to continue to push for alternatives to the music and gym. They would do great with an experienced, flexible teacher or with a teacher's aide that would help them understand what to do. But, their school is too narrow-minded.

I have given up on more testing. I believe the truth is no one knows what's wrong and they will just keep guessing, tugging us in a million different directions. Given that they can function as well as they can, it doesn't make sense to medicate or try one therapy after another. Just making things work for them the way they are seems like the sensible thing to do.

iVillage Member
Registered: 03-26-2003
Mon, 06-13-2005 - 12:05am

Ya know, it is impossible to say via internet if a diagnosis is correct, but they sure sound like they could fit PDD-NOS to me. PDD-NOS is a wide category where a child exhibits some autistic behaviors (enough to impair) but does not meet the full criteria for another autism spectrum disorder. So some kids are very impacted and some are very mild, they just don't fit neatly into one category.

You did mention the one son who seems to be doing wonderfully and has few if any PDD symptoms anymore. That is wonderful, but as a person who has BTDT, don't let your guard down. My Cait was diagnosed PDD-NOS first and made fabulous progress. By the end of K (6 1/2) she had caught up in many areas and we thought we should have her undiagnosed. We did take her off an IEP. My ped was wonderful and refused to take away the label until Cait could go a full year without medication or any supports and still do ok. Her reasoning "Just because a child with ADHD does really well on ritalin doesn't make him not ADHD anymore, it just means you found what worked." It only took less than 6 months to realize she needed the IEP desperately and she was ASD. When the support was taken away and she was put with a less than stellar teacher, she faltered and all the meltdowns and social problems came back full force.

A bit after that she was rediagnosed with Asperger's. Now she is doing great again but she is obviously AS. It has gotten more obvious as she has gotten older. It is harder to see when they are little and I really think that kids with early intervention really can blend in early grade school, but if they don't continue to get needed support some falter.

My 2nd child we delayed the diagnosis because we insisted he was to social to be autistic. He is in a special day class now for meltdowns, outbursts, etc. I mention this to explain my last child.

My youngest was provisionally diagnosed PDD-NOS this year. I am not sure I agree. I know something is going on with him. I am not sure anyone will ever be able to put a precise finger on what it is, but this time I didn't refuse the diagnosis. I learned that it looks different in all kids. That I need to get his needs met to the best of my ability now, even if that means accepting the PDD-NOS label for now.

PDD-NOS is really very open label that covers alot of territory. It sounds like what you really need is help with the district in getting appropriate supports for the boys, particularly the one who is struggling at this time. Perhaps another evaluation would be in order, a second oppinion sort of speak so that you will have more fire power when going in to get them appropriate services.

Best wishes.

Renee

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iVillage Member
Registered: 02-02-2004
Mon, 06-13-2005 - 12:54am

holy cow... my son HATES cirlce time, sing-a-long songs,holding hands,"lets do everything together" garbage!!! I hated it too as a child, I felt so uncomfortable, I have told my son's teacher, that he has MY permission to not join in... if HE wants too, fine, but otherwise leave him alone, he's very happy to just sit and listen to the others sing/dance,as my son's says... that's girl stuff!!!

my son loves gym time, he likes to run,play tag,climb, bounce a ball, play catch with ONE other kid. At one of our many meetings,I was told that my son refused to go to speech therapy one day, they(the experts) try to take him out of line, on the way to gym....and they wondered why he got upset DUH!!!,he's six... and this is his favorite time of the day!!!

I asked his speech therapist how she would like it,if she was on her way to a nice dinner, and be told that she had to go for a root canel, as she sat down to eat... would she be upset?

one thing that I have asked(demanded)for next year(gr2) that he sits near the teacher, with his back to the door, windows ect.... his classroom will be set up so that the teacher faces the door,he also has the use of an FM system.... he'll wear little earphones,the teacher wears a mic... so he hears only her voice,(when she is giving instructions)there will be 3 other kids in the class with this also, this should help with the distractions from the noise in the hall, pencil sharping,birds singing ect...

and I agree with you... Ritalin is not the answer, for some maybe... but not for us.

I know my son has "problems" not sure what... but working on it... he is very smart, reading, printing, math, very good at drawing(bragging just a little!!)... and all this with only paying attention 40% of the time.... but the teacher doesn't think he's bored!!!

only 13 more days of school..yea!!!
one thing I did notice, my son's speech/language became better as he learned to read , but he's still a little boy of very little "words"... says what has to be said... not one for long conversations/stories/tales, unlike my daughter who never shuts- up!!!gezzz(she's 4-1/2yrs)

this board is great... I love getting new ideas on how to deal with teacher, therapist, IEP's ect...

take care

Avatar for bari1
iVillage Member
Registered: 03-26-2003
Mon, 06-13-2005 - 8:07pm
I think it is great that your ds will have classroom modifications for next year.